Empowering Our Communities:

Transcription

1 Empowering Our Communities: Starting the Conversation About Living Organ Donation Karina Fernandez Director of Education and Outreach The Living Bank Lori Taylor- LeDett Living Donor The Living Bank

2 Raising awareness of the critical need for organ transplant donors through public education and advocating for donors and their families

3 Who we are: Past and Present Kelly Perdue, CPA President, CEO Founded in 1968 by five Houston women as the first organ donor registry. Championed one of the largest grassroots movements of their time. Calling upon Americans to take action and register to become organ donors. Today our focus is living organ donation Due to the dramatic rise of individuals on the national transplant waiting list The Living Bank raises awareness through public education and advocating for donors and their families.

4 Overview What is Living Organ Donation? Benefits of Living Organ Donation Who can be a Living Organ Donor? Empowering our most vulnerable communities The Living Bank a valuable community resource Living Donor Story

5 What is organ donation to you?

6 Current US data 121,000+ people in the USA are waiting for a life-saving organ transplant

7 Transplants vs Wait List US Transplants Performed, Donors Recovered, and Waiting List by Year Based on OPTN data as of November 2015 Living Organ Donation can help BRIDGE the gap *Data includes deceased and living donors

8 Some Perspective: Leading causes of death in the US 1. Heart disease 2. Cancer 3. Chronic lower respiratory diseases 4. Accidents (unintentional injuries) 5. Stroke (cerebrovascular diseases) 6. Alzheimer's disease 7. Diabetes 8. Influenza and pneumonia 9. Nephritis, nephrotic syndrome, and nephrosis 10. Intentional self-harm (suicide)

9 Living Organ Donation

10 The two types of Organ Donation Living Organ Donation Deceased Organ Donation

11 What is Living Organ Donation Living donation takes place when a living person donates an organ to another person in need of a transplant Reduces the wait time for a patient in need of an organ Lowers the number of people on the waiting list Most common and the most needed living organ is a kidney

12 Organs that can be donated-did you know?

13 Benefits of a Living Kidney Donation A shorter wait time Better quality of life Living donor kidneys last longer Eliminates the stress of waiting for a deceased kidney donor

14 Who can be a Living Kidney Donor? Living kidney donors are usually family or friends Living kidney donors can also be someone from your community or a complete stranger They must be in good health with no significant medical problems Between the ages of

15 Other Options: Paired Kidney Exchange

16 Largest Paired Kidney Exchange in the US Example of one of the largest PKEs To date the largest occurred in people participated = 35 kidneys were swapped within 3 months (photo from the New York Times article "60 Lives, 30 Kidneys, All Linked." Feb. 19, 2012.) (photo from Emory Transplant Center News, Chain 221 by the National Kidney Registry)

17 Why it s important to empower our communities?

18 Kidney Wait List Mortality In 2015, over 4745 Americans on the kidney waitlist died.

19 The Cost: Dialysis vs. Transplant There are over 650,000 Americans living with Chronic Kidney Disease (CKD) Annual Medicare/Medicaid Cost to treat CKD= $42 Billion Average Annual Dialysis Cost per Patient = $89,000 - $120,000 IT IS LESS EXPENSIVE TO HAVE A TRANSPLANT THAN TO STAY ON DIALYSIS FOR MORE THAN FOUR YEARS Average Total Transplant Cost per Patient = $200,000 - $300,000 (Plus $9,000 per year for immunosuppressive drugs)

20 Texas Kidney Transplant Data % Hispanic 35% Living Donors 23% African American 13% Living Donors 30% White 52% Living Donors

21 Disparities among minority communities Hispanics and African-Americans have higher prevalence of End Stage Renal Disease; diabetes and hypertension. Little to no access to Living Kidney Donation education or information Lack of knowledge and cultural concerns contributes to low living kidney donor rates. Misconceptions Life expectance concerns Language barriers Immigration status issues Fear of surgery, financial concerns, distrust, reluctance to request donation, and refusal of donation for donor well-being.

22 Living Kidney Surgery What people think Laparoscopic What it really is

23 Raising awareness of the critical need for organ transplant donors through public education and advocating for donors and their families

24 The Living Bank Website

25 The Living Bank Programs and Services Minority/ General Education Independent Living Donor Advocacy (ILDA) Living Donor Forum ILDA Network

26 Living Donation Resources

27 Additional Resources for Hispanics

28 Independent Living Donor Advocate (ILDA) Licensed Clinical Social Worker (LCSW) Protects and supports the best interest of the living donor candidate Ensures the donor is making a fully informed decision and that it is free from coercion Are a great resource for those wanting to become a living donor and are available to take questions in regards to the donation process.

29 Living Donor Forum Is a secure moderated online forum For this unique community The forum is a vehicle in which they can comment and share both positive and negative aspects related to their donation

30 Independent Living Donor Network (ILDAN) Online networking community/ professional development training program Live Webinars Third Tuesday of the month Free CEU s 24/7 virtual resources

31 How to start the conversation?

32 Starting the Conversation Empower yourself and learn as much as you can about Living Kidney Donation Share the information you learned today with others Be a resource in your community Know where to refer someone Provide them with written information The Living Bank is a valuable resource Encourage others to help spread the word

33 Meet a Living Donor

34 Questions & Discussion Karina Fernandez Director of Education and Outreach The Living Bank Lori Taylor- LeDett Living Donor The Living Bank

35 Learn More about Living Kidney Donation Call us: Visit us: #thelivingbank

36 Living Kidney Donor Process Complete a Pre-Screening Blood typing and crossmatching Medical testing (examples) Blood Work, CT Scan, Urinalysis Meet Living Donor Team Members Living Donor Coordinator Physician Dietitian Pharmacist Transplant Social Worker Independent Living Donor Advocate (ILDA) Await Approval from Medical Review Board (MRB) Schedule transplant Recovery & Follow-up

37 Exclusion Criteria

38 Some Risks of Living Kidney Donation Medical Finding out you have a medical problem you were not aware of Surgical Bleeding, infection, death Psychological Depression, anxiety, regret, abandonment from the transplant center Financial Hidden costs: time off from work, travel, lodging, parking, child care